Book by kathryn mcclellan by Freestyle Academy

Fighting the Good Fight

Kathryn McClellan

Dedication This book is dedicated to its subject matter; Dee Heckman. Throughout my life, she has been an inspiring and constant figure. She has survived cancer for fifteen years, and never once given up. She has survived loosing her mother, her pets, and some of her friends all while fighting this cancer, and never once lost her smile. Sheâ&#x20AC;&#x2122;s fought hard and long, and she deserves everything this world can give her. I canâ&#x20AC;&#x2122;t give her everything she deserves, but I can give her this.

Table of Contents Dee Warrior. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Whst is Lymphoma?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 2 Journeys and Changes. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 4 Whatâ&#x20AC;&#x2122;s next?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 8 Bio. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 3 Works Cited.......... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 5

Preface Going into this project, I was concerned. I’m not a person with good time management skills, and everyone I talked to said this was the hardest project of freestyle. When we started, it was even worse. I hadn’t finished the previous project and I was behind in other schoolwork, so for a while I was juggling too much at one time. However, with time and a lot of hard work, I finished before the deadline, and I had a product I felt really good about. I learned a lot, both about myself and about the software during this project. I wanted to cover someone I felt strongly about, and that ended up being someone who has been in my life so long I consider her family. I have always been inspired by her story, and my goal with this book was to inspire others with it. She is a truly incredible person, well worthy of having her story told. While this was a difficult project, it was also very rewarding. I had no idea going into this, as I usually don’t with freestyle projects, just how much I was truly capable of. The layout of my own book impressed me, as did the amount of material I was able to write. This project has been like so many others in a lot of ways, but different in its intensity. Just as most things at freestyle do, it taught me I’m more capable and creative than I ever knew before.

Dee Warrior When most people think of an incurable cancer, they think of destroyed lives. This isn’t always the case. Dee Heckman has been living with cancer for the past fifteen years. Living, not surviving. On April 11, 2002, Dee Heckman was diagnosed with non–Hodgkin’s Lymphoma, one of many different forms of what is commonly known as “Lymphoma.” Once the facts were known, her reaction was to fight. Within days she created an email list which were sent

to family and friends to keep them updated about her cancer and treatment. The list was titled “Fighting the Good Fight”, and clearly showcased her instinct to fight and stay positive. The email list has fallen aside over the years to other forms of communication, but the title remains true to Dee, still fighting the good fight fifteen years later. While Dee has had her fair share of difficulty, she has tried her hardest not to let it control the way she lives. Eventually her disease will kill her, but in the meantime, she makes sure to live her life to the fullest. A middle school teacher in a remote area and a close friend of my mother’s, Dee lives with her two dogs in a rustic gated community near Greenfield where she, along with two neighbors, live year round. The rest of the houses, resembling cabins, are owned by

families who visit for weekends or summers. There is a single road in and out of the community which runs through––not over– –a river. When the river runs too high in the winter, Dee must hike 45 minutes around a mountain just to get to the car she keeps in a local campground for this occasion. More than once, she has been evacuated from her house under the threat of wildfires Because of her outlook on life, cancer seems like any other

challenge that Dee deals with, only identifying with the “cancer patient narrative” during treatments. In the last fifteen years, she has gone through four chemotherapy treatments and one radiation treatment. When Dee was thirty– seven years old, she went to a chiropractor about what she thought were muscular knots in her neck. There she was told that they weren’t

muscle, but tumors, and sent her to an oncologist for a biopsy and diagnosis. Almost exactly fifteen years ago, Dee anxiously waited for the results of the first of many biopsies. She had gone in to determine what was causing her neck pain, and in an eternity of a few weeks, received the news that she had an incurable cancer. About a year after that, a more malignant form of the very same cancer killed

Dee’s mother. All of this stress caused the tumors in her neck to grow, and Dee went to her doctor and requested treatment. She then experienced her first round of chemotherapy, which is the use of a combination of several powerful drugs to destroy the cancerous cells. For someone like Dee, with numerous sensitivities and allergies, finding the right combination proved a very delicate process. Since it is currently still impossible to limit the targeting of the drugs to only cancerous cells, chemotherapy destroys the body’s immune system along with the cancer (“How Chemotherapy Works”). Because of this, during treatment Dee is very vulnerable. As a result of these treatments, Dee is even more sensitive to disease, and even when she’s not actively in treatment she has to be careful about what she eats and where she goes. Something as simple as sharing a bag of chips can expose her to germs dangerous to her system. Of all the treatments she’s been through, the worst by far was the radiation treatment she underwent in 2011, which almost killed her. Radiation

“Well I’ll never forget when you got into the hospital and you used the volumizing shampoo ... Hey I had no hair!” has disastrous side effects on the body, and in some of the days following her treatment, Dee was too weak to give herself the injections needed to restore her body. As a result, her white blood cell count dropped to nearly zero. For reference, a healthy white blood cell count per microliter is 4,500 to 10,000 cells. She was hospitalized while she recovered, but came extremely close to death; so close, that she thought she had died. In our first interview, she told me “When I almost died there was definitely a sense of calm that came over me and

the realization that I wasn’t gonna make it.” (Heckman) I was eleven years old at the time, and still remember when my mom stayed with Dee in Monterey to take care of her in the hospital. Before leaving, me and my siblings were asked how we would feel about getting two new dogs. At first, I was excited. It wasn’t until I realized that would mean Dee had died that I was upset. While this experience was difficult for everyone involved, it also showed the strength with which Dee faces her cancer; while she was weak from

the radiation, near death in the hospital, she had the strength to laugh with my mother over the littlest of things; “Well I’ll never forget when you got into the hospital and you used the volumizing shampoo *lots of laughing* Hey I had no hair!” (Heckman)

What is Lymphoma? Everyone, and certainly Dee, knows that cancer is the type of word that you hear and immediately wince. But what exactly is cancer? And with so many types of it floating around, what is Non–Hodgkins Lymphoma? Cancer, put simply, is when cells in your body mutate and start multiplying faster than they should. Normally, the excess cells would undergo a process called apoptosis, in which the body destroys the unneeded cells (“What Is Cancer?”). However, a cancerous cell will ignore the signal to begin apoptosis and keep dividing. This causes the cells to build up into what are called tumors. Different types of cancer form different types of tumors in different parts of the body. Lymphoma is the cancer of lymph, a colorless fluid that carries white blood cells and moves bodily fluids throughout the body. Lymph gathers in lymph nodes throughout the body, the largest ones being in the neck, armpits, and groin (“What is Non-Hodgkin Lymphoma?”). A lymphoma tumor can develop anywhere in the body, but they tend to show up in the larger lymph nodes. In Dee’s case, her tumors are in the lymph nodes in her neck. Non–Hodgkin’s Lymphoma is one of the most common types of cancer, accounting for 4% of all cancer cases in the United States. (“What Are the Key Statistics About Non-Hodgkin Lymphoma?”) The number seems small, but since there are so many types and classifications for cancer, it is actually a significant figure. For reference, Breast cancer, the second most common cancer, only accounts for 12% of all cancer cases. (“Breast Cancer Statistics”) While it isn’t the deadliest cancer out there, lymphoma is a fair killer with a 33% 5–year death rate. (“Non-Hodgkin’s Lymphoma”) What that

means is that within 5 years of diagnosis, 33% of people diagnosed will die. To make this number a little more concrete, lymphoma kills patients more often than the average professional baseball player will get a hit (25%–27%). The rates get more specific as you add more factors. For Dee’s specific classification of lymphoma, the death rate is 45% in 4 years. (“Survival Rates and Factors That Affect Prognosis (Outlook) for Non-Hodgkin Lymphoma”) With any form of cancer, relapse brings lowered odds of survival – and Dee has relapsed 6 times. Symptoms of lymphoma are fairly generic; fever, fatigue, chronic or severe infections, and bruising. (“Signs and Symptoms of Non-Hodgkin Lymphoma”) The most identifiable symptom, and the one that led Dee to her diagnosis, is swollen lymph nodes. Treatments for lymphoma include radiation and chemotherapy. Radiation kills or damages the DNA of cells in the process of splitting, and can damage the DNA of cells not in the process. (“How Does Radiation Work to Kill Cancer?”) Since cancerous cells multiply much faster than normal cells, radiation kills cancerous cells at a much higher rate than healthy cells, but radiation still has severe side effects. Due to the lethality of radiation, it can only be used on the small part of the body where the tumor is located. Chemotherapy is intravenous, so it circulates in the bloodstream and kills cancerous cells throughout the body. The tradeoff between chemotherapy and radiation is this: with radiation, you get more severe damage to all cells in a small area, healthy or cancerous, and with chemotherapy, you get less severe damage in the entire body to a specific type of cell, healthy or cancerous. Since the lymph system circulates throughout the body and has a high chance of spreading the cancerous cells, chemotherapy is often used to treat lymphoma.

Journeys and Changes Cancer is generally, and in Dee’s case specifically, a death sentence. And, as Dee learned fifteen years ago, most people don’t know how to deal with that fact. This lack of understanding can be present in both friends and family, the people who most consider to be their support system. As Dee told me the first time I met with her, “From the very first moment I was diagnosed there were people who had ... actually backed off from me.” (Heckman). Not everyone in her life was capable of helping her, and she soon learned not to rely on her family, who love her, but are unable to understand what it is she

needs. This didn’t mean that she was alone, however. Through each of her treatments, Dee has had an ally to support and help her. Through it all – the various treatments, changing support systems, and just growing older – Dee has managed to keep a positive outlook and tried her best to always find the beauty in life. Throughout the years, she has lost family, friends, pets and has been close to giving up– but she has always used her laughter as a way to keep going. As my mother puts it, “I love how she appreciates things in the moment, a cloud formation, a sunset, a funny rock on the side of a road that you drive past.” (McClellan) When she was first admitted to the hospital after the

radiation treatment depleted her white blood cells, the nurses knew how serious her condition was because she, someone who has always fought and always laughed through her pain, no longer joked or cared about fighting to stay alive. When I went to her house for our followup interview, she told me “I always envisioned visiting all my pets and explaining

to them I’m very sorry, hopefully you have a good life. I didn’t have that feeling it was just like its time.” (Heckman) Seeing herself on “The Price is Right” enabled her to see the future, and later she finally had an interest in showering–which resulted in tremendous laughter, as stated earlier. When the nurses cames to see what was going on, Dee

answered, “Come innnn, join the party!” (Heckman) This is just one example of how laughter and companionship has pushed Dee through incredibly difficult times. Dee is and has always been very positive and proactive in her life. Cancer did not and could not change this aspect of her. She is an active partner in her care and treatment, taking the time to

be sure that her doctor includes her in the conversation. In our follow-up interview, Dee told me that in January, when she felt the cancer returning, she advocated for a CT scan. “I said I’m not gonna come see the doctor, it’s a waste of my time I know I need a CT scan.” (Heckman) One area that has

been hard for her is the need to give up control over what is not controllable. Dee’s need to release control mirrors her quest to ride roller coasters, a quest that has taken her all the way to Indiana during the

summer; “When you start down that first hill and you do give up control, it’s very liberating.” (McClellan) In order to be capable of

releasing control when she had to, Dee began releasing control on her own terms. At the time of initial diagnosis, Dee did not begin immediate treatment, something most people assume naturally follows a diagnosis. Lymphomas are different, and therefore treated differently, and a tumor is only dangerous if it gets close enough to a vital organ to interfere with its function. It wasn’t until

2005, after her mother died and her tumors grew, that she began her first round of treatment. The first chemotherapy was difficult, although Dee was surprised at how impressed the nurses were with her “beautiful veins” (Heckman) Later, she would

learn that the more treatments you undergo and the older you get, the harder it is to find your veins, and Dee no longer has beautiful veins. The first drug given caused a massive allergic

reaction, but the next treatment reduced the tumors, keeping her chemo and cancer free for two years. After those two years, the cancer returned and Dee’s second round of treatment required the insertion of a port in her chest area to simplify the delivery of the chemotherapy, since her veins were no longer accessible. The port required two additional surgeries on top of the chemotherapy. Radiation and more chemotherapy have left her with permanent physical challenges, some not so pleasant: “I haven’t really had a decent poop since radiation”. (Heckman) Being a vegetarian and having a naturally sensitive body hasn’t helped Dee, either. With all of her restrictions, allergies, and dietary preferences, her meals are incredibly

specific. And since she lives a 30 minute drive away from any kind of store, it can often be difficult for her to get what she needs, especially on chemo. One of the important tasks her various support systems perform when she is in chemo is obtaining food and other essentials for Dee. Whenever she visits my family, she never leaves without stopping at Costco, and whenever we visit her, we bring groceries she may need. Another of their tasks is making sure she is still healthy, and taking care of her when she isn’t. Her friend, Aaron, told me in our interview about an experience where he had to take Dee to the emergency room; “I was prepared, prepared myself a lot for situations like that.” (Dorado) However, only once, when she nearly died, has Dee ever come close to giving up. Despite a terrifying diagnosis at 37 years old, she continues to fight the good fight.

What’s Next?

Lymphoma, like many cancers, is never really gone. Even though Dee has had this cancer for 15 years, she does not have the outward appearance of a stereotypical cancer patient. She has an infectious laugh and seemingly endless supply of energy. She is active, lives alone in a remote area with her animals, travels frequently, teaches middle school, volunteers with her community, and

has previously served as her teachers union’s president. This abundance of activity reflects who she is and who she always has been wonderfully; my mother describes her, both now and in college, as “a selfcontained tornado” and a “damn the torpedos, full steam ahead” kind of person. (McClellan) Unfortunately, since the start of this project, Dee has suffered a significant relapse of symptoms, confirmed in a recent CT scan. Her tumors have nearly doubled in the period of time between the first and

“Two things. I have to plan for living and plan for dying.”

under development. When asked “What does the future mean to you?” Her answer came quickly, and with no hesitation. “Two things. I have to plan for living and plan for dying,” (Heckman) she said. This means planning trips and outings with friends, but also making arrangements for her will. Deciding what to have for dinner and deciding who gets her house when she’s gone. It’s a morbid dichotomy, yet Dee remains unfazed. It is simply her life. Her fight. And she’ll fight it with strength and peace to the very last moment.

follow–up interviews, and there are new tests to be run to determine if the cancer has mutated into a new form. She has been in the ER at least twice in the last month and seen her pain level spike, more than once, as high as a 10 ––on a scale of 1 to 10. Treatment options are limited, since a repeat of previously used chemotherapy drugs is not recommended, and she has had severe allergic reactions to other commonly used agents. However, Dee is and always has been a fighter, and is actively looking at all options in consult with her doctor, even considering a research facility such as Stanford to see about new treatment options

Bio

Kathryn McClellan is a junior who attends Mountain View High School and Freestyle Academy. She has a dog named Max. In her (rare) free time, she enjoys reading and rock climbing. When she graduates, Kathryn wants to study Marine Biology. As an avid reader, she also wants to pursue writing. She has known Dee Heckman her whole life, and considers her family.

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